Facing Acute Myeloid Leukemia: Notes from a Survivor

In the spring of 2016, I was looking forward to a final year of teaching sociology before a retirement promising new adventures.  I felt great and had no reason to think I had any health problems.  When my doctor suggested some routine blood work, I readily complied.  When the results showed abnormally low white blood cell counts and he recommended a hematologist, I readily complied. When the hematologist ordered a bone marrow biopsy, I still readily complied.  When the results came in, my life changed forever.

The biopsy revealed that I had acute myeloid leukemia. Since this disease can kill within months, they recommended immediate treatment. The next day I checked into a hospital and started chemotherapy.  I received the standard treatment for this disease for the preceding 40 years: a “7 + 3” cocktail of cytarabine and idarubicin.  I spent five and a half weeks in the hospital dealing with various infections brought on by immunosuppression and patiently waiting for my blood counts to recover. As they did, I received the best possible news. The chemotherapy had achieved a temporary remission that bought me time to explore my options for longer term treatment.

As I awaited the molecular and cytogenic data on my cancer, I was told to expect two possibilities.  If there was a relatively low risk of relapse, I might get by with additional chemotherapy. If there was a high risk of relapse, a stem cell transplant was in order. When the results placed me in an intermediate risk category, I had a tough choice to make. After researching my options, getting second opinions, gathering advice, and reading my doctor’s cues, I settled on the transplant.  My logic was that if I opted for more chemo and it didn’t work out, I would deeply regret not having the transplant.  If I had the transplant and it didn’t work out, at least I would feel as if I gave it my best shot and it just wasn’t meant to be. Despite the 15-20% mortality rate from the transplant itself, I was at peace with my decision to proceed.

My benefactors were two anonymous sets of parents who had donated their newborn infants’ umbilical cords to a transplant bank.  Once we found two good matches, the cords were shipped to my transplant hospital, the cord blood was extracted, and it was transfused into my bloodstream. These stem cells just “knew” where to go to engraft in my bone marrow and begin producing a healthy new immune system.  For the second time, I received the best possible news. Three weeks after transplant, one of my donor’s cells were 99% engrafted. With that result, I returned home for a prolonged recovery.

For the next few weeks, I faced daily clinic visits, blood tests, transfusions of platelets and red blood cells, growth factor injections, and lingering effects of my conditioning chemotherapy and radiation as well as the engraftment process itself. As the weeks turned into months, my recovery proceeded apace.  It eventually became clear that I could claim the best possible news for the third time, as my new cells and old body got along with each other and there was no evidence of graft-vs.-host disease.  Looking back over the entire process, my oncologist summarized it by saying “this is as good as it gets.”

Many people wanted to give me credit for surviving this disease. While it is tempting to claim such credit, I remain agnostic about whether anything I did had a material effect on my positive outcome. I think my survival was largely a matter of luck, chance, and random variation across AML patients. Nonetheless, there were several practices I engaged in throughout my treatment that deserve mention. At the very least, they brought me peace during a difficult time. And at the most, they may indeed have contributed to a positive outcome for which I am eternally grateful.

The first set of practices that sustained me was mindfulness, meditation and yoga.  To the greatest extent possible, these practices helped me let go of ruminations about the past or fears about the future and focus on the present moment.  Focusing on my breathing kept me centered as – like my breaths – each moment flowed into the next.  Maintaining a non-judgmental awareness and acceptance of each passing moment kept my psyche on an even keel.

Rather than extended periods of formal meditation, I simply sought a mindful awareness of each moment, hour, day and week.  I also went through a daily yoga routine even while receiving chemotherapy. Doing so helped me retain my identity as I weathered the toxic treatment and its inevitable side-effects.  In the evenings, I used a technique called a body scan to relax and prepare me for a peaceful sleep. The cumulative effect of these practices was a calm acceptance of circumstances I could not change alongside a serene hope that all would work out for the best.

A second practice involved being a proactive patient.  Perhaps it was my training as a social scientist that allowed me to bring an analytical curiosity to my disease and the treatments my doctors were deploying. I asked lots of questions during their all too brief visits, and they patiently responded to all my queries.

On several occasions, my proactive stance made a positive contribution to my treatment.  When I developed a nasty, full body rash, it took a collaborative conversation between me, my oncologist, and infectious disease doctors to isolate the one drug among so many that was the culprit. I identified it, they switched it out, and the rash abated. On another occasion, I was able to identify two drugs that were causing an unpleasant interaction effect.  I suggested changing the dosing schedule, they concurred, and the problem resolved.  The sense of efficacy I received from this proactive stance also helped me retain a positive mood and hopeful stance during my prolonged treatment.

A third practice involved maintaining a regimen of physical activity.  During my first, five-week hospital stay, I felt compelled to move and get out of my room for both physical and social reasons.  I developed a routine of walking the halls three times a day, trailing my IV pole behind me.  They tell me I was walking roughly 5 miles a day, and every excursion felt like it was keeping my disease at bay and connecting me with all the nurses and staff members I would encounter as I made my rounds.

When I moved to my transplant hospital, I was confined to my room but requested a treadmill that met the physical need for activity even as I sacrificed the social benefits of roaming the halls.  But throughout both hospital stays and later at home, I maintained stretching activities, exercise workouts, physical therapy routines, and yoga to keep my body as active and engaged as my circumstances would allow. These activities also gave me a welcome sense of efficacy and control.

A fourth practice involved maintaining my sense of humor.  I have always appreciated a wide variety of humor, ranging from bad jokes, puns and double entendre to witty anecdotes and stories to philosophical musings.  Cancer is anything buy funny, which is precisely why humor has the power to break through the somber mood and fatalistic worldview that so often accompanies the disease.  Using humor became another way of keeping the cancer at bay.  It was a way of saying you may make me sick and eventually kill me, but I’m still going to enjoy a good laugh and a bad joke along the way.

Alongside these practices I could control, there were also beneficial circumstances beyond my control that worked in my favor.  These included the privilege of being a well-educated white male that led to my being treated respectfully and taken seriously by all my health care providers.  In addition, my doctors and nurses consistently combined skill and expertise with compassion and empathy in ways I will never forget or could ever repay. And finally, my privileged status and excellent care played out against a backdrop of strong social support from a dense network of family, friends, colleagues and neighbors.

A final practice that integrated everything else was writing my story as it unfolded. Upon my first hospitalization, I began sending emails to an ever-expanding group of recipients documenting and reflecting upon my disease, treatment and recovery.  Narrating my story for others required me to make sense of it for myself.  The ostensible goal of keeping others informed became a powerful therapeutic prod for my own understanding of what was going on around me and to me.  While my doctors’ ministrations cured my body, my writing preserved my sense of self and a coherent identity.

I eventually sent over 60 lengthy reports to a group of roughly 50 recipients over a 16-month period.  This writing would eventually serve three purposes.  It was a sense-making procedure for me. It was a communication vehicle with my correspondents. And finally, I realized it could be a resource for others in the broader cancer community. With that insight, I did some additional writing about lessons learned and identity transformations and published the resulting account.

As I mentioned at the start, I will never know if any of these practices or circumstances made a material contribution to my survival.  But they maintained my sanity and preserved my identity during the most challenging experience of my life. Regardless of the eventual endings of our journeys, sustaining and nurturing ourselves along the way is a worthy goal in itself.



 

Patient Advocacy: Ten Tips to Develop a Stronger Social Media Presence

Social media is a powerful addition to our patient advocacy toolbox. We can use it to raise awareness of our cause, build a community of supporters, promote our key messages and highlight our patient advocacy activities. To help you strengthen your online presence and create more visibility for your cause, I’ve put together this list of ten actionable tips you can put into practice right away.

1. Optimize Your Social Profiles

Your social media profile should be considered a key element of your advocacy brand. What will people’s first impression be of you when they encounter your online profile? What might make them decide to follow you?   Review each of your existing social profiles with the following points in mind.

  • Is it time to use a more professional picture to represent yourself online? Upload an image that is clear and easy to see, like a head and shoulders shot, or your organization’s logo. Make sure to upload images with the correct dimensions for each social platform (check out this guide to social media image sizes).
  • You have an opportunity to personalize your profile on Facebook and Twitter by uploading a custom header image. Use this opportunity to bring more authenticity to your account, for example you might use a picture of yourself holding a sign with a hard-hitting message. Or perhaps there’s a project or campaign you are currently working on. If so, include an image to represent this in the header space.

Take Action: Complete all sections of your profile to convey a stronger message and identity.  Schedule a review date every few months to check your information is still current.

2. Focus on Being the Expert One Platform at a Time

Each year brings shiny new social media tools and new features for existing tools. It’s tempting to jump on board the latest social media platform with the aim of being everywhere at once; but rather than spreading yourself too thinly, focus on mastering one or two platforms really well before moving on to the next one.

Take Action: Look back on the past six months and ask yourself which social media platform worked best for you? Which gave you the most engagement? And which platform had the least engagement? Consider focussing your efforts on the high-performing platform and becoming known as the go-to expert on this channel before adding anything new to your social media mix.

3. Schedule Your Social Media Posts

The internet is global and if you want your message to reach further than your own backyard, you need to hit multiple time zones. Tweets have the shortest lifespan of any social media post. Even though the latest Twitter algorithm means that posts are no longer displayed chronologically, Twitter is fast-paced, and messages get buried quickly. To counter this, you need to share your post multiple times on Twitter to increase visibility. Scheduling tweets allows you to reach followers when they are most likely to be online (even if you aren’t there at the same time) and allows you to maintain a regular and consistent online presence.

Take Action: Use a scheduling tool like Buffer or Hootsuite to schedule your updates to reach more people, more often. Don’t just post the same update every time. Vary your updates by changing around the headline, highlighting a statistic or quotation or adding different images.

4. Curate Content

The ability to curate credible content to share with our communities is a key skill for patient advocates. Hereditary cancer advocate, Amy Byer Shainman believes “patient advocates not only have a responsibility to curate trusted content but that it is an imperative if you are even going to be calling yourself a patient advocate.”

Content curation is defined as the process of gathering information relevant to a particular topic or area of interest.  While this definition sounds simple, there’s a world of difference between simply gathering information and being an effective curator. A good curator knows how to find, aggregate, and synthesize reliable information, putting it into context for their communities and sharing it in a format that is easy to access and understand.

Take Action:  Set up Google Alerts for the healthcare topics of interest to you.  Google Scholar is also useful as it indexes most peer-reviewed online journals of Europe and America’s largest scholarly publishers.

5. Create Visual Impact

You’ve surely heard this before, but it’s worth reiterating: images matter — a lot. In an age when people’s attention span averages 8 seconds (that’s shorter than a goldfish!) visuals are memorable and effective because they help people process, understand, and retain more information more quickly.

Visual content is 40x more likely to get shared on social media than other types of content according to research by Buffer. Furthermore, people connect more emotionally with images than text, and in an increasingly crowded digital landscape images can break through the online content clutter. The type of visual assets you can create include images, videos, infographics, quotes and GIFs.

Take Action: Add an image to all your online posts — even those that are text-based. Create a strong visual identity and maintain consistency across all your images by sticking to the same colours, fonts, and layouts. Read How To Create Professional GraphicsEven If Youre Not a Graphic Designer for more tips.

6. Use Relevant Hashtags

Hashtags are a powerful way to increase your visibility on social media. According to Twitter’s own research tweets with hashtags show a 100 percent increase in engagement (clicks, retweets, likes and replies).  Jo Taylor, a moderator of the UK-based breast cancer Twitter chat #BCCWW, explains that “finding disease hashtags opens up connections. If you connect with others you will be able to meet others easily online and you will build and learn from there.”

Take Action: Visit symplur.com to find the relevant hashtags for your disease area. If you can’t find a hashtag related to your topic, you might consider creating your own. For more information on using hashtags strategically read Everything You Ever Wanted To Know About Hashtags in Healthcare…But Were Afraid To Ask!

7. Live-Report Conferences and Events

Reporting live from an event is a way of engaging your followers by sending updates about an event as it occurs. It allows you to expand the reach of in-person events to provide valuable insights to those who are unable to attend in person. It’s also a way to increase your visibility as an attendee and enhance your credibility.

Live reporting tools include live-streaming using Facebook LiveInstagram Live, and Periscope (Twitter’s live-streaming app).  You can also share posts to your Facebook page and share photos and video clips via Instagram and Snapchat during the event.

Take Action: Read The Advocate’s Guide to Reporting Live from Conferences and Events for more tips on live-reporting.

8. Take Part In Twitter Chats

Twitter thrives on its community and the more you connect with other users the more quickly you will grow your own following. Joining a Twitter chat is a super way to connect and engage. When you attend a Twitter chat regularly, people will get to know you and in this way, you can quickly develop and grow your own network of supporters.  If you’re not familiar with them, a Twitter Chat is a public Twitter conversation around one unique hashtag. This hashtag allows you to follow the discussion and participate in it.

Twitter chats can be one-off events, but more usually are recurring weekly chats to regularly connect people, for example #PatientChat held every other Friday at 10:00 am Pacific/1:00 pm Eastern. The chat will be hosted and the host will ask questions along the way to stimulate discussion and sharing of ideas. There are chats for most disease topics and a full list can be found by searching the database of the Healthcare Hashtag Project. This is also a useful resource to find Twitter users to follow. In addition you will find past transcripts of chats on the website so you can familiarize yourself with the chat and its norms before taking part.

Take Action: There are chats for most disease topics and a full list can be found by searching the database of the Healthcare Hashtag Project. And “if you can’t find a tweet chat you enjoy,” recommends patient advocate, Annette McKinnon, “start a new one, register it @symplur and build a new community.”

9. Create a YouTube Channel

People engage with video more than any other form of content (written, audio, images, etc.). YouTube with more than 1.8 billion monthly active users remains the online video leader. 4 million YouTube videos are viewed every day, and the average session duration of 9 minutes and 28 seconds. That’s more than many other social networks.

Take Action: While producing your own video may seem daunting, video creation has never been more accessible through smartphones.  You can also create simple videos for your channel using free tools such as Adobe Spark and Lumen5 (see my YouTube channel for examples of Lumen5 videos).

10. Maintain a Consistent Content Creation and Promotion Schedule

Social media is an ongoing commitment. You need to post consistently to stay in front of your audience’s eyes and keep growing.  One key to maintaining a steady stream of quality content is to re-purpose what you already have. Check your blog’s analytics (or Twitter and Facebook analytics) to see the most popular posts you’ve written or shared.  Can you expand on these to include new research or thinking? Perhaps the content can be turned into an infographic or a slide-deck.

Take Action: Set aside one day each month to map out upcoming cause awareness days. Then use a simple excel spread sheet to create a calendar for social media postings. Include relevant hashtags and images.  A content calendar helps you maintain a consistent content production schedule, enabling you to plan for seasonal content, and annual campaigns.

Social media is an ever-evolving and fast-moving field, and with so much to learn and do, it’s easy to feel overwhelmed. You don’t have to implement all these tips at once. Try adding one new strategy to your social media plan each week and measure its impact at the end of each month. This way you will know which of these strategies are moving you closer to a stronger online presence.

Here’s to your social media success!

 

Advice For Newly Diagnosed Patients #patientchat Highlights

Last week, we hosted an Empowered #patientchat on advice for newly diagnosed patients. The #patientchat community came together and shared their best advice and tips.

The Top Tweets and Advice…

 

Ask Questions

 

 

 

 

Seek a Second Opinion

 

 

 

 

Stay Informed


Full Chat

Finding Your Voice #patientchat Highlights

Last week, we hosted an Empowered #patientchat on finding your voice and what stops patients from seeking a second opinion.

A second opinion is crucial to prevent misdiagnosis or unnecessary procedures or surgeries. A study done by Mayo Clinic showed that as many as 88% of patients who get a second opinion go home with a new or refined diagnosis. That shows that only 12% of patients receive confirmation that their original diagnosis was complete and correct. Still, a lot of patients never get second opinions. So, we wanted to chat about this and see what the Empowered #patientchat community had to say, and these were the main takeaways:

The Top Tweets…

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


Full Chat

Tips on Finding a New Job or Changing Career after Cancer Treatment

In this three-part series, I’ve been exploring different aspects of returning (or continuing) to work after a cancer diagnosis. So far I’ve tackled issues from preparing to return to work and handling your workload, to dealing with problems such as fatigue and concentration.  In the final part of this series, I’m turning my attention to finding a new job after cancer treatment has ended.

There are a number of reasons why you might be looking for a new job after cancer. Perhaps you crave a fresh start, somewhere where you’re not known as the co-worker with cancer.  Or perhaps you need more work flexibility – such as the option to work part-time –  but your current employer isn’t in a position to make the adjustments you need. Or maybe you want to change career, switching direction towards something more meaningful and fulfilling.

Whether you’re looking for a new job or considering a new career direction, this month’s article has plenty of practical advice to help you.

1. Get Clarity on Your Direction

A good place to start is by getting clear on your new goals, financial needs and current skills and abilities. Grab a pen and some paper and take some time thinking about your responses to the following questions.

  • What are my core skills and strengths? Am I using them to their fullest in my current (or previous) job? Which skills and interests from my previous jobs will transfer over to a new position or field?
  • What new insights or skills have I gained through cancer? Do I want to be able to use these in my job?
  • Have my career goals changed? Do I want to work in a similar job but with more work-life balance? Or do I want to try something new?
  • Do I have the required skills for a new career interest? Will I need to retrain? How will this impact me financially?
  • Do I have the stamina to take on something new? Do I need to consider the impact of any long term side-effects from treatment on my ability to work?

2. Update Your Resume

The next step is to get your resume in order.  If it’s been several years since you last applied for a job, you may need to take into account that resume writing has changed quite a bit in the past decade. For example, the chronologically based resume (listing job titles, companies and dates in chronological order), while still popular, is giving way to a more dynamic skills-based one.   This is good news if you want to work around a gap in your employment history.  For a skills-based resume, you will create a relevant summary of your skills, career accomplishments and career goals and position this directly below your name.  You should aim to provide an example of an area of accomplishment related to each specific skill.

Pro Tip: When it comes to including employment dates, don’t include months in the dates, only years. This helps narrow the work gaps.

3. Develop Your Network

Make a list of everyone you know who is currently working in your industry or the industry you’d like to be in. Take a strategic approach by setting achievable goals for the number of people you want to connect with every week. Reach out to them and tell them about your plans to find new work or change career direction. Ask them to keep you updated of any new job openings and leads. Hiring managers are more willing to consider you for an interview after a personal recommendation.

Pro Tip: When it comes to building your professional network there’s no better tool than LinkedIn. LinkedIn multiplies your existing personal and professional networks by making the connections of your connections available to you at the touch of a digital finger.

4. Optimize Your LinkedIn Profile

Your LinkedIn profile is the cornerstone of your professional brand online. While you may already have a profile on the platform, is it optimized for a job search?   LinkedIn profile optimization simply means that your LinkedIn profile is fully updated to maximize your visibility on the platform. Everything you do on LinkedIn begins with your profile. Yet many professionals still treat their LinkedIn profile as little more than a place to park their resume and promptly forget about it.

You won’t be effective at LinkedIn networking if your profile doesn’t entice people to get to know you. Here are some quick tips to optimize your profile (for a step-by-step guide with more detailed information, click here).

  • Make your first visual impression count by displaying a high-quality professional photo.
  • Adding a background image directly behind your photo will help brand your profile. Think of it as your professional billboard.
  • Create a strong professional headline. This is a critical step because your professional headline is not just highly visible on LinkedIn, it’s also searchable by Google.
  • Nurture your LinkedIn relationships through regular engagement. This is not about making large numbers of contacts; rather, it’s about making meaningful connections.
  • Join industry relevant groups. Job openings are often posted by recruiters in industry groups. You will find groups by clicking on Interests > Groups from your profile or searching keywords to identify groups with interests similar to yours.
  • Become an active and engaged user. When you log into LinkedIn, notice each time who shows up in your home feed. Most likely you will see the same few people. These individuals are getting more visibility because they are more active. If you make the commitment to become more active in your network, you will increase your visibility
  • Be strategic about when you’re active on LinkedIn. As a general rule, LinkedIn users are most active right before and after work (7–8 am and 5– 6 pm), as well as during lunch time.

Pro Tip: Don’t be afraid to use social media to your advantage: if you know the hiring manager’s or recruiter’s name, add them on LinkedIn.

5. Mind Your Digital Footprint

Employers are increasingly carrying out social media checks on prospective employees. Anticipate this by googling yourself to see what turns up.  Here is where a professional profile on LinkedIn can be enormously helpful to present the best impression. Because of the way Google’s search algorithm works, an optimized LinkedIn profile will frequently show up in the first few places of a Google search for your name.

While LinkedIn is an asset, other forms of social media may harm your search for a new job. Sharing personal information about your treatment through a blog, Instagram, Twitter or Facebook is publicly searchable by potential employers.  Many of us turn to social media sites and blogs to keep our families and friends updated on our progress and to seek support during cancer treatment.  But when your focus returns to work, you may not want your employer or prospective employer to know of your cancer history.

Pro Tip: Take some proactive steps to protect your privacy online.  Set privacy settings on things like Facebook so that nothing can be seen by people who aren’t “friends” (including pages you are a fan of – an often forgotten detail). Delete what you can from your postings on Facebook and other media that talk about your cancer. Set up a Google Alert to monitor mentions for your name.

6. Handling the Job Interview

A job interview is stressful at the best of times, but when you’re anxious about handling the question of cancer, it’s doubly so. Sixty-one percent of cancer survivors looking for a job said they fear disclosing their cancer diagnosis will negatively affect their chances of getting hired.

Rehearsing what you plan on saying ahead of time greatly reduces any anxiety you may feel. The more prepared you are before the interview, the more relaxed and at ease you will appear during the interview. Draw up a list of potential questions and practice your answers.  Accentuate the positive. For now, put aside your worries about how to explain the gap in your resume and spend some time focusing on why you are the right person for the specific job that you are applying for. List at least ten great qualities and skills you have and ask friends and family to help you brainstorm more. Try to find a willing friend or family member who will role-play the interview with you.

Remember you don’t have to disclose your cancer history either on your application or during an interview. The Americans with Disabilities Act prohibits employers from asking job applicants about a disability (this includes cancer) before offering them the job.  However, you may decide you want to be upfront about a work-related absence. If this is the case, you can deal with it by briefly explaining you had some time off work for a health (or family) related reason, but that’s behind you and you’re now looking forward to re-joining the workforce. Keep it simple, stick to one sentence or two and don’t be tempted to digress. Then switch the direction of the questioning back to your skills and qualifications for the job.

Pro Tip: Do your research before going into an interview. By showing off your knowledge of both the company and the industry, you are conveying to the interviewer that you are still up-to-date even if you have been absent from work for a period of time.

7. Considering a Career Change

Cancer changes your outlook on life.  Alongside an increased awareness of the preciousness of time, you may also have decreased tolerance for spending time on meaningless tasks. Many cancer survivors, my own self included, have felt a calling for more meaningful work after their treatment has ended.    I’d like to finish this back-to-work series by sharing the stories of three such people who have used their cancer experience as a way to help others and forged new careers in the process.

Jennifer Elliott was a pre-kindergarten to elementary school age music teacher before being diagnosed with bilateral synchronous breast cancer in 2014. Since her diagnosis, her focus has shifted to patient advocacy.  “My advocacy began when I realized that my access to industry trained people, thanks to where I live and who my friends are, was impacting my care in a positive way,” said Jennifer.   “That made me angry, because we should all have equal access to quality care.  I’m now applying to graduate degree programs in public policy because, as I’m advocating for breast cancer survivors I’ve learned that all the things I’m advocating for are impacted or dictated by policy and if I want to have the broadest impact I need some policy skills and training.”

Terri Coutee was focused on a life-long dream of completing a Master’s program in teacher leadership when she received news of her second breast cancer diagnosis. “The diagnosis was the catalyst to evaluate my professional career,” explained Terri.  “I had to focus on my treatment and major surgery over a period of seven months. This gave me time to re-evaluate, research, and refocus. I learned less than 25% of women and men were not being given their options for breast reconstruction after mastectomy. As a life-long educator, I realized I could educate those affected by breast cancer and learn from my experience. A blog about my successful breast reconstruction experience led to opening a non-profit Foundation to educate a global audience through social media, attending medical conferences, and making as many personal connections as I could to assist others through their own journey. The need is endless because we haven’t found a cure for breast cancer, yet. Until we do, I will continue to educate and provide resources for the very best medical care for others faced with mastectomy.”

At the age of 51, Chris Lewis wasn’t looking for a career change. “I was working for myself and was at the peak of my earning power,” he said. “Then a poor prognosis of incurable blood cancer and my life was turned upside down. I have since had many years of complex treatment meaning I could not return to employment of any description. As my survivorship moved from months to years I needed a purpose. My body was in bad shape but I still had a business mind.”

Unhappy at the poor resources and help for people living with cancer, Chris took to the Internet to voice his displeasure, leading to him running his own successful website Chris’s Cancer Community.  “This led to me becoming a global expert speaker and writer”, said Chris. “I am self-taught in social media and an award winning writer. As a patient advocate I speak at many high profile conferences. Cancer has taken a lot from me, but has shown me a new way of life I would never have experienced. The big bonus is the incredible people I get to meet and talk to daily. It seems even at my age I have found a new career!”

 

My Breast Cancer Story

I was diagnosed with breast cancer in 2011. It was found by accident on a chest x-ray, and I was shocked. There was no history of breast cancer in my family, and I never thought it could happen to me.

Cancer patients are supposed to be upbeat; we are supposed to relax and trust that our doctors will provide the best possible care. I had never had a serious illness before, so I was naïve about what to expect from the medical establishment. I wanted to feel that I was safe and in good hands, and that I could simply follow my doctors’ advice. Unfortunately, that was not my experience.

Our physicians are usually our primary source of information, but the fact is that medicine in the USA is a business. Physicians are paid for their time, so unless a patient is a family member or a VIP, most physicians will not allot a patient any more time than the number of minutes that is the “standard of care.” Some doctors are more caring than others, but the for-profit system that we have in the United States rewards oncologists financially if they squeeze in as many patients as possible. A surgical oncologist will want to do surgery; a medical oncologist will want to do chemotherapy; a radiation oncologist will want to do radiation. This is what they know and what they are paid to do; and most oncologists want to get on with it as quickly as possible.

What they will usually not do is spend extra time consulting with specialists and/or looking in the medical literature for newer and better ways to treat their patients. They will generally not become knowledgeable about any kind of treatment outside their specialty, such as nutrition or any type of complementary medicine. I suspect that most oncologists would be willing to spend the time if they were paid, but insurance in the United States will usually not reimburse for these kinds of activities. In fact, the extra time that an oncologist would have to spend would actually cause them to lose income.

It seemed to me they just wanted me to follow their program, but I knew from even a very quick survey of the literature, that cancer decisions are not easy and simple. The treatment is often unsuccessful, and the side effects can be life threatening. Every patient’s case is different, so the “one-size-fits-all” approach on which traditional cancer treatment is based may not be the best way to proceed. Every year 40,000 women in the United States die of breast cancer after getting the standard of care. I did not want to be one of those statistics.

Because I have an academic background, it was natural for me to jump in and do a lot of research. I went to books, journals, and the Internet. I also got a huge amount of help from other patients. I told lots of people that I had breast cancer, and I gave them permission to tell anyone they wanted. My thought was that the more people they told, the fewer I would have to tell. But I had a huge side benefit—because breast cancer is so common, lots of former patients offered advice and support. I also joined a local breast cancer support group and an online support group at breastcancer.org. These patients were incredibly valuable to me. They referred me to doctors, including an integrative oncologist; they told me how to save my hair through chemotherapy; they told me about a program to reduce side effects through fasting; I was able to avoid neuropathy, mouth sores, and much more.

As of now, I have no evidence of breast cancer, but I am at high risk for recurrence or metastasis, so I am not able to simply return to the life I had before. Conventional cancer care offers periodic tests to see whether the cancer has returned, but it does not offer anything beyond hormone therapy to prevent the cancer from returning. The problem is that if it returns it will likely no longer be curable. I had to go outside of conventional oncology, where I found a lot of evidence that changing one’s “terrain” can keep the cancer dormant. Working with an integrative oncologist, I follow a program of diet, supplements, exercise, mental/spiritual practices, and avoidance of environmental carcinogens.

I learned a great deal from my cancer experience that most people don’t know, and I wanted to share my experience. I wrote a book that I hope will help other patients take charge of their care, to help them make the best medical decisions and to stay in remission afterward.

Randy Broad: Voice of the Patient

Board Member, Randy Broad, speaks at House Minority Leader Nancy Pelosi (D-CA) Press Conference

Patient Empowerment Network Board Member, Randy Broad, was invited by Minority Leader Pelosi to the Capitol building to give a ‘Voice of the Patient’ presentation on the subject of continued coverage of pre-existing conditions. Above is a clip from Minority Leader Pelosi’s new conference on June 27, 2018. You can see the full conference on C-SPAN here.


Transcript:

Rep. Joe Kennedy III :

For many of us, battling lung cancer would be the ultimate fight for our lives. For Randy, that fight was just beginning. Now, he fights for every single patient who has had to confront what he did. We’re lucky to have Randy with us today.

Randy Broad:

Thank you, Congressman. 10 years ago, this last March, I went to bed that night just like everyone in this room who go to bed tonight. The next morning, I woke up in a coughing fit, and I coughed up blood and I knew something was obviously amiss. Called my doctor. Went in and within seven days I had been diagnosed with Stage 3 Small Cell Lung Cancer.

Being 52, businessman, a father of two teenage kids, and considered extremely low-risk for such, this came as quite a shock. Fortunately at the time, my company provided excellent healthcare for me and my employees.

During treatment, I was deemed inoperable and the post surgeon meeting I learned I had maybe a year, two tops, to live. Well, as you can imagine that had a pretty profound effect on my life. So, the first thing I did was sell my business and focus on my family. Now, I was faced with personal healthcare insurance and was now paying $1,000 a month with $1,000 deductible and a significant co-pay. But in a few years from there, came along The Affordable Care Act and this changed everything with how I was insured for my health care needs moving forward, both insuring access and treatment with financial protections. Needless to say, I slept better that night.

I joined the Washington state Health Care Exchange, called Apple Health. We grow apples. My insurance premiums were cut in half while maintaining the exact level of care and I was able to maintain and keep my existing treatment team, at Seattle Cancer Care Alliance, which I cannot even begin to tell you how huge that is.

With the recent rumblings here in Washington D.C. to abolish The ACA, me, along with 16 million other cancer patients alone are extremely concerned about maintaining our access to quality health care coverage. Especially, when it comes to pre-existing conditions which we will all have. Health care is the number one cause of bankruptcy in The United States. That probably doesn’t come as a surprise to too many people in this room. And it’s going to get worse as those of us who will forever have a pre-existing condition, can be discriminated against it.

With The ACA, we had begun to experience what patient-centered care can be like and truly means. We cannot go backwards. To what it was like before the protections for pre-existing conditions. And I request Congress to protect The ACA so it remains available to other patients like all of us and like yourselves now and in the future.

Thank you very much for having me here.

How to Save Your Life in a Complex Health Care System

Health care systems are complex and overburdened. This is not unique to certain developed or developing countries – it’s a global challenge. Being able to provide optimal health care at a cost-effective price, without doing harm, is a daunting task for any country, government or organization.

This is not only because of the complexity of health care systems and the human bodies they interact with, but because we are dealing with human lives.

I came face-to-face with the challenge of complex health care systems when I was diagnosed with a non-malignant brain tumor.

I was no longer a ‘routine patient’. I had multiple specialists, multiple appointments and multiple medications. Life and health care became far more complex. Feelings of uncertainty, powerlessness and being afraid were very real.

As a manager at work who dealt with multiple projects, timelines and teams, my immediate response was to look at my health care as a manager. I knew that teams became effective with good management – surely the same could be true for my health care?

I came up with a simple approach to help me navigate the complex waters of the health care system. I called it my T.E.A.M Approach (Track, Educate, Ask, Manage). My family, support group, and doctors were a critical part of this T.E.A.M. Having an ‘approach’ to help me manage my diagnosis, made me feel less powerless, afraid and uncertain.

I never realized the true importance of being an activated patient and having a T.E.A.M Approach until it saved my life – when I was misdiagnosed.

It dawned on me how simple actions by patients and care partners might save a life. I wanted to share this message so it might help other patients, care partners and health care professionals – connect, communicate and collaborate – in our complex health care systems. Over the past decade, there has definitely been a shift from passive to activated patients as patients and health care professionals recognize the benefits. In general, activated patients have better clinical outcomes, better patient experiences, tend to seek preventative care sooner and have lower costs.

This inspired me to speak at TEDx on How to Save your Life in a Complex Health Care System and write a book: ACTIVATE – How to Save your Life in a Complex Health Care System.

My book discusses the challenges faced within health care systems and how patients can be more proactive participants in their health care management. It’s a quick reference guide for patients, care partners and health care professionals looking for guidance and solutions on how to put one’s health in one’s own hands and collaborate with health care teams.

If you are inspired to learn more and help spread this important message, ACTIVATE will be available for FREE on Amazon for 5 days only from 26 – 30 April 2018. Click here.

Put your health in your own hands – you might save a life – yours or someone you love.


Read more about Claire and her story here.

Out of the O.R., Ready for Recovery

Even a simple procedure requires preparation for a successful recover. Don’t go it alone, and don’t fail to plan ahead.

You’ve made the scary decision to move forward with an invasive medical procedure. Your date is set and your doctor has explained the pros and cons. While you might think all that’s left to do it show up with someone to drive you home, your best chances of a complete recovery begin now with preparation for after the surgery.

Ask For Help

This cannot be underscored enough. Even if you’ve only having a simple outpatient treatment, always have a responsible adult on-hand for the first day or two post-op. The University Of Rochester Medical Center lists nausea, gastrointestinal discomfort, and pain surrounding the incision as common discomforts after any surgery. Coupled with grogginess, these issues can make it difficult to perform even minor tasks, such as dressing the wound, caring for children and pets, and taking medication on time.

Easy on the Activities

If you’ve undergone a major surgery, you’re best bet is to stay as still as possible for a few days to allow your body time to begin the healing process. Prior to “going under the knife,” prep an area of your home where you can convalesce in peace and quiet. MedlinePlus recommends setting up shop on the first floor, placing regularly-needed items within reach, and keeping a phone in your recovery zone.

Diet Does It

The food you put into your body now and after the procedure plays a major role in your recovery. In the days and weeks before the operation, eat plenty of healthy foods, including lean meat, fruits, vegetables, and fish. Keep pre-portioned plates of these foods in the fridge or freezer to heat up easily when you’re on your own. Click here for a few tips on how to make your own “TV dinners” with fresh ingredients. Not only are these DIY dinners convenient, but will help you fuel your recovery from the inside out.

Add a Day Away

Take at least one extra day off work to allow extra time to account for complications. Even if you feel back to normal shortly after treatment, your body is working overtime regenerating tissue, routing white blood cells to the injured area, and filtering out toxins from the immune system.

Special Considerations

Certain medical procedures require more pre- and post-op preparations than others. Gastric sleeve (bariatric) surgery and dental implants are two of these.

Bariatric recovery

Bariatric surgery is a last-resort for people suffering with extreme obesity, especially when accompanied with diabetes, heart disease, and other related conditions. The effects of weight loss surgery are long-lasting; you won’t “go back to normal” afterwards. You’ll need to adjust your dietary habits long-term or risk returning to the same unhealthy weight. Your new lifestyle should start well before the surgery by slowly replacing bad eating and exercise habits with good ones. Additionally, after the surgery and despite being a minimally invasive procedure, your pain level may be high for several days as your body adjusts to its altered state, liquid diet, and lack of calories.

Dental implant recovery

Dental implant surgery is not one procedure but a series of events that must take place in a specific order before the final implant can be placed. The Mayo Clinic reports that the process can take several months and may require bone grafting if your jaw bone isn’t healthy enough to support the new tooth. Dental implants, when complete, may last up to 25 years and require proper hygiene exactly like your natural teeth. It is important to maintain a relationship with your dentist and make regular visits for cleaning and implant inspection.

The pain and discomfort of surgery ushers in a new era of your health. However, you must take precautions before and after in order to reap the benefits of medical intervention. Make sure you have help and talk to your doctor about ways to stay healthy once the scars have healed.


Image via Pixabay

Qualifying for Disability Benefits with Cancer

Have you been diagnosed with cancer? If so, you might be eligible for financial aid. If so, the Social Security Administration (SSA) might be able to help. The SSA offers monthly financial resources for people with serious illnesses who are unable to work. While a cancer diagnosis does not automatically qualify, thousands of people with cancer are eligible for assistance.

Medically Qualifying for Disability

The SSA will refer to its own medical guide, known colloquially as the Blue Book, when you apply for disability benefits with cancer. The Blue Book contains details on exactly what medical results you’ll need for cancer to qualify. Cancer has different qualifying criteria depending on your specific diagnosis, so there’s no way to know if you’ll qualify without first consulting the Blue Book. Here are a couple of examples on how to qualify:

Prostate Cancer

Prostate cancer is one of the most commonly diagnosed forms of cancer, but the good news it’s highly treatable. Because of how receptive prostate cancer is to treatment, the criteria for qualification for prostate cancer are challenging to meet.

You will qualify for disability benefits with prostate cancer if your cancer has progressed or returned despite one round of anticancer therapy (usually three months’ hormonal therapy or chemotherapy will qualify), OR

Your cancer has spread to an internal organ, OR you have small-cell prostate cancer

Prostate cancer usually has to be Stage IV to qualify, but again, if your cancer has returned despite treatment you may still qualify at a lower stage.

Esophageal Cancer

Esophageal cancer is typically aggressive and challenging to treat, so you’ll actually qualify for Social Security disability benefits with just a diagnosis. Other forms of cancer that qualify with only a diagnosis include:

  • Acute Leukemia
  • Gallbladder cancer
  • Brain Cancer (malignant, not benign tumors)
  • Inflammatory Breast Cancer
  • Liver Cancer
  • Pancreatic Cancer
  • Salivary and Sinonasal Cancers
  • Thyroid Cancer

The entire Blue Book is available online, so you can review the cancer listings with your oncologist to determine if you’ll meet a listing. Typically, if you can meet any one of the following criteria you’ll qualify:

  1. Your cancer is inoperable or untreatable
  2. Your cancer is Stage IV
  3. Your cancer returned despite treatment

Starting Your Application

Applying for benefits is a tedious process, but fortunately you can complete the entire application from the comfort of your own home. Apply online at the SSA’s website—you can even save your progress to be completed at a later date.

If you’d prefer, you can also apply in person at your closest Social Security office. There are over 1,300 offices located across the country. You can schedule an appointment to apply in person by calling the SSA toll free at 1-800-772-1213.

Once approved, you can spend your monthly benefits on medical bills and upcoming treatments, childcare, housing for your family during treatment, food or utility bills, or any other daily living expenses.


Additional Resource:

Social Security Administration: https://www.ssa.gov

Social Security Disability Evaluation: https://www.ssa.gov/disability/professionals/bluebook/

Qualifying Criteria: https://www.disability-benefits-help.org/resources/medical-evidence

The Blue Book: https://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm

Social Security Disability Application: https://www.ssa.gov/applyfordisability/

Social Security Offices Locator: https://secure.ssa.gov/ICON/main.jsp

Bills Social Security Can Cover: https://www.disability-benefits-help.org/blog/bills-social-security-disability-benefits-cover


This article was provided by Disability Benefits Help (www.disability-benefits-help.org), an independent resource dedicated to helping people across the country receive the disability benefits they need. For more information, feel free to reach out to our team at help@ssd-help.org.

Living With Two Cancers

My story with cancer started in 2008 when I was diagnosed with Multiple Myeloma. I was fortunate to have a primary care physician who noted abnormalities in routine blood work and sent me to a hematologist oncologist. At the time of diagnosis I was at the MGUS stage, precursor to active Myeloma, and was monitored every 6 weeks. During that time I switched to a Myeloma specialist in the health system where I was employed as a PT. I also hit the internet to learn more about this cancer that I had never heard of. BIG MISTAKE! The published survival rates at the time were 2 years. I wasn’t ready to hear that so I stopped reading.

Over the next year I pretty much refused to own the fact that I had a cancer diagnosis. I wasn’t being treated, might never be treated and felt ok except for fatigue. That all came to a screeching halt one day when I had extreme pain in my left arm and suddenly couldn’t lift my arm. I went to the ER and was diagnosed with a pathological fracture of my left humerus, upper arm. I saw my specialist the next day and began treatment immediately since I now officially had active Myeloma.

I responded well to treatment and went on to have an autologous stem cell transplant (ASCT) 9 months later. This led to a complete response and almost 3 years with no treatment until I relapsed. I began treatment again with the same drugs that had worked so well before and again had a good response. I continued with this for almost 4 more years until one day in October 2016 all hell broke loose. I was in my oncologist’s office for a regular appointment waiting for him to come into the examining room when I crashed. I was rushed across the street to the ER where I was admitted. A few days later, after many tests, I was diagnosed with Acute Lymphoblastic Leukemia, ALL.

I spent the next month in the hospital receiving induction chemotherapy for the ALL and the next 6 months for consolidation therapy. During those months of treatment for the ALL I relapsed again for the Myeloma. After I completed my ALL treatment, that’s now in remission, and recovered from that chemo, I began treatment with one of the monoclonal antibodies for the Myeloma. Now, 8 months later, I feel about the best I have in years and my blood levels are all in the normal range.

Although I’ve gone through a lot, especially since being diagnosed with the ALL, I continue to enjoy and live my life. I worked 6 more years after my diagnosis with Myeloma. I specialized in treating people with cancer as a PT. My cancer diagnosis brought me closer to my patients since they knew that I understood what they were going through. I continued to travel to Europe to teach, attend conferences and for pleasure. After my retirement I  have also been volunteering for the American Cancer Society and been very active as a board member and program chair of my local Myeloma support group.

Encouraging others who have been diagnosed with cancer has been a mission of mine for many years. Now, as a person with two blood cancers, I find that that helps others, but also me. With the treatments that are now available to us, we often can live fairly normal and long lives. Who would have thought that I would still be here when I was diagnosed 10 years ago? I attribute that to the wonderful medical care I have received from my oncologist and his team, the research that has led to more effective treatments and to the support of my friends and family. But, most of all, is my own self education about my cancers and my relationship with my oncologist. I believe that being an active partner in my care has been extremely important. I look forward to continuing to enjoy those things in life that are important to me.

Nancy Stewart
Multiple Myeloma 2008
Acute Lymphoblastic Leukemia 2016

Introducing Claire Snyman: An Empowered Patient

“Change is the only constant” rings true in my life.

In 2010, I was diagnosed with a rare non-malignant brain tumor after the onset of vertigo and migraines. My son was only four at the time. During my patient journey, I had differing opinions and changes in treatment from the standard of care and realized a few important things. How critical it was to partner with my medical team, how important it was to be active in my health care and be my own advocate and how important it was to keep asking and get a second (or third) opinion if needed.

I started keeping track of all my medical records, educated myself on my condition so I could have informed discussions with my medical team, made a list of questions before each appointment and started to manage my medications and appointments – it was like a full time job!

In 2012, I became acutely ill with vertigo and migraines. I knew something was wrong even after the specialists and the ER doctor sent me home. Because I was active in my health care and educated about my condition, I kept asking questions. It was finally confirmed that my brain tumor had doubled in size. My brain was swollen and I needed brain surgery to survive. I am forever grateful that my husband and I kept on asking questions – it saved my life.

This experience highlighted the importance to me of being your own advocate, putting your health in your own hands and not being a passive participant in your health care. It’s also important to connect, communicate and collaborate with your medical team – in the interests of a better outcome.

After my recovery, I looked for various ways to use my patient journey constructively.

– I co-authored a collaborative study between patients and neurosurgeons at Johns Hopkins University to help increase collaboration between patients and health care teams and get more information in the public domain.

–  I am passionate about inspiring people to put their health in their own hands, having personally seen the impact it can make to a person’s life.  I developed The TEAM Approach for Empowering patients  (Track, Educate, Ask, Manage) – a simple and easy-to-remember tool to help individual’s transition to being an active participant in their health care.

I recently spoke at TEDxStanleyPark 2018 on “Your health is in your hands” and how it might save your life – hoping this message will activate others to become proactive in their health care.

I’m a firm believer than when something in life is no longer an option, when a door closes, another door opens. It may be different to what you expected, but if you are open to looking for it – you will find it. That is definitely true for this chapter in my life!

Negotiating Cancer: Tips From One Who’s Done It

Editor’s Note: This blog was written by Stefanie Joho, an advocate, speaker, and colon cancer survivor, for The Washington Post. You can see the original blog here.


At the age of 24, after two surgeries and two aggressive rounds of chemotherapy failed to cure me, my oncologist sent me home to die. When I was first diagnosed with colon cancer in 2013, I’d never even heard the word immunotherapy. I didn’t know that my doctors wouldn’t have all the answers. I thought clinical trials were last-ditch efforts rather than treatments that save countless lives. I didn’t know that a treatment geared to fighting my specific type of cancer and the genetic components of my tumor would go on to potentially offer tens of thousands of patients a revolutionary new path to surviving cancer in 2017.

Because I’m one of the very few lucky ones who looked into the abyss and made it out on the other side, I feel it is my duty to speak up and share some of the critical things that I have learned in what is now a new era in cancer care. Because a disease that should have killed me instead launched my career in patient advocacy.

[‘This is not the end’: Experimental therapy that targets genes gives cancer patients hope]

First and foremost, it is important to remember that every cancer is unique. Your journey will be different from mine. Your cancer is yours and yours alone. So think of the following points as “road signs.” They’re ones that I wish someone had shown me when I felt lost, with nowhere else to turn. The goal of this guide is to potentially help shape your thinking as you become an active participant in saving your life. More than anything, I hope it prompts you to question the presumption of cancer care for nearly a century.

1. The more we know, the more we can fight for our lives. 

We look to doctors in their white coats to be the experts — partly because, in a moment of such despair, we want to be able to look to someone to just give us the answers. But you should know that you will not find that person in anyone but yourself.

In the beginning of my cancer journey, I felt intimidated by my doctors and made several decisions that I now regret. I walked into appointments and agreed to everything instantaneously, without even considering a second opinion. As my cancer kept coming back and the treatments kept failing, I decided that the only chance I had to make it out alive would be to become an active participant on my journey. I would have to educate myself. I scoured the Internet. I became an “expert” not only in my specific disease, but also in the current cancer landscape.

I’m in no way encouraging you to become your own doctor and understand all the science. And I’m certainly not encouraging you to take everything you read on the Internet as fact. But in 2017, with the amount of accessibility to information, I’m encouraging you to seek it out. Never take anything at face value or trust blindly. Make informed decisions, not decisions based on fear. Walk into appointments with your doctors as an equal, not as a passive bystander. Being an informed cancer patient today is a full-time job. As with any job, that means learning new skill sets and finding the resources needed to succeed.

2. Asking questions is not making trouble. 

You will often be made to feel that being a “good patient” means not asking questions. But do not be afraid to speak up. Your life quite literally depends on it. Come into every appointment with a prepared list. If possible, bring someone with you who can take notes. If you are confused about something, ask. If you think of it later, write it down. Remember: You’re the one whose needs are paramount. You’re the one who is fighting for your life. Make every thought, concern and feeling heard. If it isn’t received the first time, say it as many times as necessary.

If you begin to develop a symptom from a treatment side effect or from the cancer itself, understand that it is the system’s job to help you get relief. If your doctors aren’t taking you seriously, do not believe their judgment over yours. And if you feel that your physician doesn’t understand or listen to you, then perhaps it’s time to seek one out who will. In my opinion, an individual who does not have empathy is not a physician.

3. No two cancers are the same. Become an expert in YOUR cancer. 

No two cancers are the same. Increasingly, knowledge of such individual variation is being shown to lead to more effective treatments. Ask your physicians and understand every type of genetic testing available to you. The more granular you can get about the specifics of your disease, the more you will maximize your chances of identifying the best possible treatment for your “personal” tumor. (Discovering the genetic biomarker of my cancer saved my life.) Continue to expand your resources so that you can be an expert in your own cancer.

4. Take note of EVERY potential side effect. Report everything. 

The incredible advances in cancer treatments have created a new set of challenges for clinicians, especially in how to identify the side effects. Given that these are new treatments, your doctors are not as practiced with them as they are with chemotherapy and radiation.

For example, immunotherapy is entirely different from traditional treatment. The former utilizes the patient’s own immune system, whereas the latter aims to attack only the cancer cells. Early recognition and proper management of side effects can make the difference between life and death.

Don’t hold back a single concern from your doctor and care team. Even if you think it sounds minuscule or irrelevant, your oncologist needs to know everything to best care for you. Listen to your body. Observe and report any changes.

5. Clinical trials are not a last-resort option.

The lines of treatment are rapidly changing, and, more often than not, getting access to cutting-edge treatments entails enrolling in a clinical trial. There’s an unfortunate misconception that clinical trials are reserved for those who have exhausted all other options. In reality, trials can actually offer access to the most individualized cancer treatment. And in fact, immunotherapy is more and more becoming the first line of treatment — and even being used before surgery to prevent relapses.

And just as individual patients can’t tackle their disease by themselves, we all ultimately must help one another by sharing and participating in clinical trials. Only 4 percent of cancer patients are currently enrolled in studies. Explore trials at cancer centers with a lot of experience in the type of therapy being tested. See if you have options outside of what has been standard of care for 70-plus years.

In the doctor-patient relationship, patients must understand that they are partners of science and as big a part of the cure as doctors. Without us, and our willingness to participate, medical advances would not exist. I will always feel a tremendous sense of pride for participating in a study that will save many thousands of people’s lives.

6. Cancer is not just a physical disease. 

It is critical throughout your journey to address the mental, emotional and spiritual aspects of this disease. Seek help, support and healing from other places, too. There are many schools of thought about why people become ill and what can be done to help them recover. It’s important to maintain your anchor in generally accepted medical principles, but don’t be afraid to look further up- and downstream to see if other currents of healing can add value for you and your care team.

As only one example among many, learning about nutrition made me feel as though I were actively fighting and doing something every single day to help my body heal.

7. Hope is a lifeline.

Don’t let anyone ever take that away from you. I believe in hope. Period. It saves lives. When your mind tells you that it’s over, the body has no reason to keep fighting. If you find yourself drifting in that direction, remember: “You haven’t failed the treatments; the treatments have failed you.”

Of course, doctors must tell their patients the difficult truth. But the specific words used to deliver such news matter. If your doctor is unable to provide you with hope or encouragement to keep fighting, find the hope and strength from within yourself and the loved ones around you.

8. None of this can be done alone. 

This might sound overwhelming. But with great power comes great responsibility. You are powerful, but you are not superhuman. Know your limits, and respect those limits.

Cancer is not a journey that you can navigate alone. The people and professionals with whom you surround yourself will alter the course of your journey. They will lend you strength when you feel you simply have nothing left to give.

If you physically or emotionally cannot actively advocate for yourself, then ask someone to be your advocate. When things were particularly bleak, my younger sister, Jess, often had to speak up for me. She knew what my doubts were, what my concerns were and what was important to me. She became my voice when I didn’t have one.

Create a health-care team that listens to you and cares about you and includes you in every aspect of your decision-making process.

Lastly, and so very importantly: Connect with others in the community. As much as your loved ones will do everything in their power to be there for you, they simply will not be able to understand the complexities of what you are grappling with on a daily basis. Making friends with other cancer patients (even through social media) enabled me to share the fears and anxieties that I was too ashamed or embarrassed to talk about with those who weren’t confronting their own mortality. I could speak openly about my side effects, the changes taking place in my body, my isolation. I could utter the words, “I’m ready to give up,” without the looming guilt associated with saying that to loved ones.

It certainly doesn’t have to be about only cancer, all of the time, but knowing that this kind of support exists is healing. It makes you feel understood.

Empowered Patient Nejat

Nejat is a 28-year student majoring in public health who attended our Digital Sherpa Workshop in Philadelphia, PA. After she shared her inspiring story with us, I asked if I could interview her to share her story of empowerment with you.

Kara: Why did you decide to study public health?

Nejat: I really decided to apply for public health because I wanted to do nursing but felt that I couldn’t get in. I never thought I would end up loving public health so much. It really helped me understand so much of my health. It really taught me how to advocate for myself. I am planning to apply for nursing school soon.

Kara: How and when were you first diagnosed?

Nejat: I was sick in January of 2017, the doctor told me that I shouldn’t have came to the emergency room for stomach pain.  He didn’t give me a CT scan, he tried to prescribe something for pain but I left after being upset. I had emergency surgery in March 2017 after I got sick in the morning and couldn’t stop throwing up. They told me I had a half cyst and half mass. Which measured about 17cm in my stomach The mass had immature germ cells which was considered cancerous.  I started chemo July due to being put on surveillance so when it started regrowing chemo therapy was the second step. I did 12 weeks straight of chemo. B.E.P was the regimen.

Kara: What does being an empowered patient mean to you?

Nejat: It means to go to the doctors office and know exactly what is wrong with you. To understand the options of treatments available. To request a second opinion and feel like you have a choice. To take control of your health and healing.

Kara: How did you know that you needed to advocate for yourself?

Nejat: I never liked not knowing what was wrong with me. I would research and read forums day and night. When doctors tried to plan according to what they felt best I always tried to understand it so I could figure out if it was best for them or me. Most doctors would tell me things off of research. During chemo most of what I experience was different than what they seen in research. I felt like if I never opened my mouth and spoke often. Those 12 weeks would have really been worse. Each new word I went back and googled the definition. Each symptoms I looked up. I dictated what I wanted and I can say it worked great in the end. I am on the road to recovery

Kara: How do you navigate advocating for yourself?

Nejat: I ask for options. I google everything, I look at forums. I join and ask questions.

Kara: Do you think that it is important to find a doctor that you feel comfortable?

Nejat: Yes! I had a doctor tell me she had to do surgery which didn’t align with what my other doctor told me. I told her no and went to a different doctor which gave me options. I felt that she didn’t hear my voice. She didn’t give me options. Yes I’m sick but let me feel I still have a little control of my decisions.

Kara: How has managing your condition affected your daily life as a college student?

Nejat: It starts with your mind set. I have been positive through out my journey. I am determined to not let my hardships be the reason I fail. I have my bad and good days but I try to keep pushing. I am still in school and a few months away from graduation. Though I’m still recovery I’m pushing. I do acupuncture to help my neuropathy and vitamin C to heal rebuild my body.

Kara: What are your tips to help someone become an empowered patient?

Nejat: Start with thinking positive you can make your journey less stressful with thinking positive always look for second opinions if you can. Trust how you feel and never look at cancer as if it’s the end keep fighting.

Wondering how YOU can advance MPN research?

September is Blood Cancer Awareness Month and we’ve spent the month focusing on ways you can become a more empowered patient. If you missed our recent webinar: What YOU can do to advance MPN Research, the replay is now available. As always, we’d love to hear from you about ways you’ve empowered yourself!